The Path Less Visible: Decoding the Autism Care Pathway Through the Lenses of Black Caregivers

Black families seeking access to quality medical care, interventions, and support before and after a diagnosis of “autism spectrum disorder” encounter countless disparities. As an example, Black children who miss the autism early detection window are at risk of losing the opportunity to receive specialized intervention during a critical developmental period—essential to increasing the acquisition of language and social skills that are necessary for children’s overall functionality as students and citizens of society. Therefore addressing inequities among families is not just a matter of improving autism care but a necessity in dismantling systems of oppression that perpetuate structural racism. By amplifying the voices of Black families in autism research, we can develop sustainable resources beyond temporary, superficial band-aid solutions. This study investigates how race, ethnicity, and cultural influence Black caregiver’s navigation of the autism care pathway, affecting timely diagnosis and supports. Using a qualitative approach, the current study explores the multidimensionality of structural racism as it relates to caregiver knowledge, awareness, and experiences of discrimination associated with navigating a diagnosis of autism. The research aims to highlight Black caregiver voices, uncover how systemic inequities shape caregivers’ understanding of autism, and understand barriers they may face in accessing accurate diagnoses and support. Findings have the potential to illuminate the complex ways intersectional factors influence individual experiences and broader healthcare and educational systems.